The old days
Regarding the past puts the issues of identifiability and disclosure of personal and public genomes into perspective. The protection of individuals against the possible negative consequences of disclosure of their genetic information has been a major concern throughout the history of human sequencing. The Human Genome Project (HGP) has placed the protection of individuals at the core of its Ethical, Legal and Social Implications program since its inception as part of the HGP in 1989. In 1983, the US President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, as the designated advisory body to the Congress on these matters, reported on 'Screening and Counseling for Genetic Conditions'. The requirement of confidentiality already ranked first - before 'autonomy' - among the Commission's five recommendations. The Commission recommended that genetics-related information be kept confidential and coded, although, notably, even these nascent recommendations made this conditional: 'whenever that is compatible with the purpose of the data bank' [3].
At the time there existed no doubt that, with the appropriate measures (in particular through coding techniques), anonymity could be preserved. Yet evidence contradicting this viewpoint - in the form of forensic identification of individuals using DNA - already existed in the 1980s. As genome sequencing becomes increasingly widespread and large amounts of data and biospecimens accumulate in many different types of biobanks, addressing the identifiability of individuals is an increasingly pressing issue.